HERS 2?

I was diagnosed with breast cancer on thursday 28th Jan. It was a complete shock to me out of the blue as I had a all clear mammogram letter just before christmas so when I noticed a lump in the new year I didnt think it was anything but went to the doc anyway and following a biopsy the consultant confirmed I have cancer.
I have a date for the op and I am aware i may need further surgery dependant on what they find. they say I am HERS2 which worries me as when I looked it up it seems it is a faster growing cancer and I must admit I am scared it has spread everywhere. I know its one step at a time and I know I have to go through the whole process and get the full results from the OP before they really know - but it doesnt stop me worrying about it now. I know theres probably no answer to this but some thought from others would be helpful.

hi saffronseed,

I think you mean HER2+ just to save confusion. You are right this form of breast cancer is more aggressive but for the past few years since this was discovered Herceptin has been available and is given to those who are her2+++. It is a very expensive drug and given to those diagnosed with this type of cancer for a year. I was diagnosed 20 years ago before her2 or herceptin was heard of and mine was very aggressive - kept coming back. But when my tissue was tested after the last surgery in 1999, I was finally put on herceptin in 2004 when I was dx with bone secondaries and things have been stable since then. Try not to do too much googling at this stage it can be very frightening. Come here and ask your questions, or talk to the helpline here if you are anxious.

Dawn
xx

thanks I think you are right - googling is disturbing!

My consultant and breast nurse implied to me that HER2+ was positive thing and did mention that it meant I could have Herceptin - they also said it was Oestregen (?) postive which meant I could have Tomazipan? not sure if that is the drug is called - so do I have both or just one.

I am sure they were not trying to mislead me but having seen I have an aggressive form of cancer from the intrantet and not having it explained is to me is worse.

Losts of questions like what does aggressive mean - is it faster growing and faster spreading! or is it just more difficult to get rid of? I may ring the nurse on Monday to ask these questions…

Dear saffronseed,

I have attached a link to the Breast Cancer Care publication “Understanding your pathology Report” which may help you understand some of the terms used. I hope this is helpful.

breastcancercare.org.uk/upload/pdf/pathology___feb_08_0.pdf

Very best wishes

Janet

BCC Facilitator

Hi again saffronseed,

The drug (tablet) for ER positive that was mentioned to you would be tamoxifen. I suppose aggresive to me means more persistent, but really since herceptin it has made a lot of difference, and because you are also er positive there are other treatments available to you as well as the chemotherapies.

Dawn

p.s. I just noticed the term you used was oestrogen positive - when I put ER positive - it means the same thing. ER = oestrogen and PR = progesterone - those are two terms you might hear and cancers are either oestrogen (ER) positive/ progesterone (PR) positive or negative.

Thanks the fact sheet was brilliant and explained a lot of the terminology I heard but didnt really take in.

It does seem to me that given what I have been told about my cancer I may need to have chemo after surgery and thats helpful to have in the back of my mind so it doesnt come as a bombshell when I do finally get the results.

If i don’t need to then thats a bonus. i just now need to get my husband to face up to the possibility as he seems to be in denial any advice on how to do this would be appreciated

Hi saffronseed

We have a booklet which your husband may find helpful to read - it’s written specifically for partners.

Here is the link:

breastcancercare.org.uk/upload/pdf/bcc08_in_it_together_In_it_together.pdf

It can be either downloaded or ordered through the site.

I hope you and your husband find it useful.

Kind regards

Louise
Facilitator

Hi Saffronseed,

If you are HER2+ then you will almost certainly need to have chemo as herceptin is not given without it.

Dawn

thanks for all the help, although its not good news I am the sort of person that needs information so I can understand and come to terms with things and whats going to happen to me.

Both booklets are great I have emailed them to my husband’s work address and asked for him to print them off for me (I am not at work at the moment) this will give him to chance to read them and it will make it easier for us to talk about things.

Hi Saffronseed,

Just thought I’d add some clarification. Her2+ cancers are more agressive, but if you go on then to have herceptin, your prognosis is the same as someone who is not her2+. And yes, you can have both herceptin and tamoxifen if you are both her2+ and ER+.

I spoke to my breast cancer nurse who is really helpful and accessible which is great

She checked my notes and confirmed that I didn’t have HER2 and so I wouldn’t need Herceptin…

I do remember the consultant saying something about HER2 but obviously I misunderstood what he was saying which is probably understandable given the circumstaneces - so thats one less thing to worry about at least!

I am new to this having been initially diagnsoed on the 21st December after a routine mammo with extensive DCIS in the left breast. Had Mastectomy on the 13th January and now find it was invasive grade1 4mm but unfortunately a microscopic amount in one out of seven nodes. Have opted for chemo and Herceptin as it is HER2 and then Tamoxifen. I was told that with the chemo the chances of it returning wihtin 10 years is 10% . I know I could just walk away with tamoxifen but I know I would never forgive myself if it comes back and is more widespread. At least this way I can throw the book at it over the next 16 weeks. I will start chemo on the 23rd February. I have been at my lowest over the last week waiting for final test to see if it wa HER2 and have thought myself dead and buried. I have never cried so much. I feel better now I know what I have to do. My consultant is very good and I feel confident with her. The emotion seems to have subsided as I am now preparing to do battle.

Hello ado

Welcome to the BCC forums. You’ve come to the right place for support as many of the users of this site have a wealth of information and experience between them.

While you are waiting for replies could I suggest that you give our free helpline a ring on 0808 800 6000 and have a confidential chat with one of the breast care nurses who are here to support you through this, lines are open to Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.

best wishes
June, moderator

Hi ado and welcome.

I think you are finding what many of us have experienced. That awful feeling that on hearing the diagnosis we see ourselves ‘dead & buried’, and although for me that was 20 years ago now I still remember those very strong feelings. Then the relief really that comes once a plan is formed and you move closer to getting on with it. Hope it all starts soon for you now. You will find a lot of support here with many who have been through all the ups and downs of treatment so keep coming and asking your questions.

Dawn
xx

Hi Ado I know how you feel I was dx in December and had wle nodes negative I was told this week mine is her2 it scared the life out of me when I read this is aggressive. I too am having chemo rads herceptin and tamoxifen. It is strange though once you know how you somehow gain strength. I will be starting the chemo just after you I think going to see onc next week. Keep in touch

Thank you Lala and Dawn. I am trying to get back to normal but am still feeling the effects of the Mastectomy and although am doing short walk each day I then associate my aches and pains with cancer. No letter from the hospital regarding chemo. I know it is likely to be awful but I just want to get on with it. Thanks for your support.